Community News–Health Subcommittee Markup in the House Energy & Commerce Committee Advances Legislation for Children with Cancer

The Energy and Commerce Committee advanced proposals earlier this month that will extend Americans’ access to telehealth services, strengthen and preserve Medicaid, and encourage innovation to help children with rare diseases. In a Subcommittee markup, the Health Subcommittee forwarded 21 pieces of legislation to the Full Committee for consideration.  Several of them are important to the childhood cancer community:

  • Creating Hope Reauthorization Act (HR 7384). Pharmaceutical companies developing treatments for rare diseases that mainly affect children are eligible for rare pediatric disease priority review vouchers supporting their work. Children represent about half of all people living with a rare condition. Unless it’s reauthorized, the voucher program is due to expire on Sept. 30.
  • RARE Act (HR 7383). This legislation ensures that incentives for rare disease research and development are preserved and adequately supported, protecting the U.S. Food and Drug Administration’s long-standing interpretation of the Orphan Drug Act. That act, which came into law in 1983, facilitates the development of rare disease treatments.
  • Give Kids a Chance (HR 3433). Helps ensure kids with cancer have access to the most modern clinical trials by  authorizing the FDA to direct companies to perform a pediatric cancer study for a combination of drugs if the company is seeking approval for a drug to treat an adult cancer and that drug has a molecularly relevant pediatric indication.

Under the committee markup, the texts of the first two bills — Creating Hope and the RARE Act — were incorporated into the Give Kids a Chance Act.

In addition, two other bills had favorable support from the Health Subcommittee.

  • Accelerating Kids’ Access to Care Act (HR 4758). This legislation aims to make it easier for children with rare diseases whose health care coverage comes through Medicaid or the Children’s Health Insurance Program to access quality, specialized care. Because care for rare diseases often requires distant travel, the bill targets current bureaucratic barriers to out-of-state care.
  • Telehealth Modernization Act (HR 7623). This measure extends for two more years flexibilities in the use of telehealth set up by Medicare during the COVID-19 pandemic, which are due to expire at year’s end. Telehealth refers to remote care given via video conferencing or other technologies, considered helpful to rare disease patients with limited ability to  travel for specialized care or needing to travel long distances for such care.


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